Current and bereaved caregivers’ experiences of participating in the adapted Telehealth Making Sense of Brain Tumour program in the context of high-grade glioma

Background The Telehealth Making Sense of Brain Tumour program (Tele-MAST) was adapted for caregivers (cTele-MAST) to address the lack of caregiver-specific psychological support interventions in the context of high-grade glioma. This study aimed to explore current and bereaved caregivers’ reasons for seeking psychological support, experiences of participating in cTele-MAST and impacts on mental health and quality of life. Methods A longitudinal multi-methods design was employed, capturing qualitative and quantitative data prior to cTele-MAST (Time 1), one-week (Time 2) and 3-months post-intervention (Time 3). Qualitative data were analysed using reflexive thematic analysis and quantitative data using repeated measures ANOVA. Participants were offered individual cTele-MAST sessions via videoconferencing and completed semi-structured interviews and measures of mental health and quality of life (QoL). 18 caregivers (15 female, M age = 47.27, SD = 9.37) of people with high-grade glioma were recruited, and 15 completed cTele-MAST (M = 9.5 sessions). Results Three themes were identified. “Caregiver expectations of the self” reflected a desire to become stronger, more resilient and quickly adapt their lives around caregiving. “Enabling, connecting and reframing” represented perceived benefits of cTele-MAST in terms of accessibility, brain tumor-specific expertise, and support to reset self-expectations. “Finding one’s self” reflected caregivers better acknowledging their own needs and understanding themselves in grief. Significant post-intervention reductions in distress and stress were evident, but not for depression, anxiety or QoL. Conclusions Caregivers found participating in a psychological support program tailored to their needs beneficial. Early referral to cTele-MAST and flexible ongoing access to psychological support is recommended.